Episode 126: Community Grant Recipient: Smile Through Art Program

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

Many people with Parkinson's disease benefit from a variety of programs that address physical, emotional, and cognitive problems accompanying the disease. One program that strives to benefit all three aspects is Smile Through Art. Its workshops aim to develop fine and gross motor skills, and the mental challenges of creating art provide cognitive stimulation. By involving the care partners of people with PD, relationship building can be another positive outcome.

During the pandemic, many other programs have been hampered in their outreach to affected communities, but fortunately, through a community grant from the Parkinson's Foundation, Smile Through Art has been able to provide its services. I spoke with program founder Saba Shahid to find out about the program, how the grant has enabled it to persevere through the pandemic, and what the process was like to get the grant. I first asked her what the workshops entail.

Saba Shahid 1:50 The Smile Through Art workshops, they are typically an hour long. There's several different facets when it comes to what goes on in this one hour. So, we have three main components: we have a cognitive component, we have a creativity component, and we have a movement component.

Now, the focus of these Smile Through Art workshops is to try to help different symptomatic areas that people with Parkinson's may encounter. Now, this can include fine motor control, gross motor control, rigidity, depression. We actually have a study we did on how these art workshops positively impact a person with Parkinson's mood. We also take a look at micrographia and we do a lot of work towards stimulating both the left and the right side of the brain. We do this in that one-hour long workshop, and every time we meet, it's something different. It's a different art activity, it's a different focus on a different symptom.

Through the workshop series, the participants are often challenged, both physically and mentally, as they're, you know, focusing on something different, something outside of if they were just sitting at home watching TV. So it's proven, and it's shown to be very beneficial in providing that cognitive stimulation and fostering this growth and this hope through art, which ultimately increases their confidence, mood, and outlook, and ability to live better with their symptoms.

Dan Keller 3:15 You received a community grant from the Parkinson's Foundation. What kind of opportunities has that opened up for the Smile Through Art program, and is it funding any specific work within the program?

Saba Shahid 3:29 With living in this pandemic, it's been very, very helpful for us to continue reaching people with Parkinson's that are living in New England, but also in other parts of the country. Some of our workshops are still happening in the virtual platform. So, given that we have the support of the Parkinson's Foundation, we've been able to link up with the various Centers of Excellence throughout the country and get this program out to other people living with Parkinson's. We're really grateful for this opportunity, as it's allowed us to continue functioning in the middle of this pandemic. It's allowed us to continue to bring smiles, hope, and ability to those people living with Parkinson's.

Dan Keller 4:11 Are there in-person on-site programs going on also, besides the ones over Zoom?

Saba Shahid 4:19 Yes, so we just recently started again to have in-person workshops. Right now, they're only happening in the Massachusetts area.

Dan Keller 4:28 Getting back to the community grant from the Parkinson's Foundation, what was the application process like, and how long did it take before you knew if you were awarded a grant?

Saba Shahid 4:39 So, the application process was all online through their platform. I thought of the many grant processes I've seen, it was pretty straightforward and pretty simple to get online to get my account created, and then work through the process. I think it was very well organized, and that it gave us the opportunity to present what the work is and to request the funding, so I think overall it was a pretty easy process.

I think it took about maybe three to four months after submitting. Let's see, we submit in January, and then we usually find out around the May-June timeframe, and then we were able to get started. I believe it was the end of June, early July with implementing the program.

Dan Keller 5:22 Who participates in the workshops—ages associated people, people with PD, whoever comes to them?

Saba Shahid 5:30 So it's primarily people living with Parkinson's, both men and women, varying ages. We've had folks that have early-onset Parkinson's to folks that are in their 80s that are participating. I think one thing that we've been able to do, because we have, you know, the ability to do it virtually, is to target some of the older population as well, that, you know, because of this pandemic, are a little hesitant to leave their home, and rightfully so. So, I think it's allowed us to target that demographic as well, the older folks living with Parkinson's.

You know, when you think of creativity and you think of art, you don't necessarily imagine very many men participating in this workshop, but believe it or not, with Parkinson's being primarily a male-dominated disorder, we probably have a good ratio of men to women, and sometimes more men being in the workshops than women.

Dan Keller 6:20 Are care partners also welcome to come to the workshops?

Saba Shahid 6:25 Yes, absolutely. So that's one thing that we actually promote and try to encourage, because the Smile Through Art workshop gives both the caregiver and the person with Parkinson's a level ground to not have to necessarily focus on the struggles that come with Parkinson's, but to use some of the frustrations and channel them in a positive way to be able to create something meaningful together. So, oftentimes we see that relationship spark again. We see the caregiver, the spouse that's attending the workshop, have that glimpse of hope and smile when they see their person with Parkinson's working through their tremors, for example, to create a piece of art. So it's really nice to see that bond ignite again in this setting.

Dan Keller 7:10 How does art address the symptoms? Is it all painting, or are there other media, such as clay, or what do you consider the breadth of the art that you offer?

Saba Shahid 7:20 It's our goal to expose people with Parkinson's to all different types of art, so sometimes we might be using paint, sometimes we might just be using a piece of paper and something to write with, sometimes we might be using other materials like clay, we even use household materials like Q-tips and cotton balls. So it really varies. Our focus is to try to use different materials that will make a positive impact and will challenge the person with Parkinson's to exercise some of those fine motor and gross motor skills.

Dan Keller 7:52 What are the benefits of the movement portion of the workshops, and what sort of movement do people participate in?

Saba Shahid 8:00 The movement portion of the workshop is particularly important, because, as you know, when you're living with Parkinson's, the one thing you don't want to do is be sedentary for too long. So, our movement portion incorporates various different fine motor exercises, which focus on building hand strength to aid with fine motor control, as well as aid in doing daily tasks around the house.

So, we may take a break from the creative activity that we're doing and refocus our energy on our hands to build what we call hand endurance, which is basically building that hand strength to then be able to more comfortably and confidently use the various different art materials. And over a course of time, as folks learn these exercises, they're able to do them at home as well, and they're able to see an improvement in not only their ability to, let's say, hold up a paintbrush or hold up a pen or a pencil, but also when doing fine motor tasks around the house. So we've really seen that the movement portion has provided this sense of accomplishment, and that folks with Parkinson's are able to use their hands and not feel that stress or that rigidity or that tension that comes when you have Parkinson's.

Dan Keller 9:16 What did you base developing these workshops on? Did you go back to the literature and find pieces that you could draw from that have some proven success or applicability?

Saba Shahid 9:30 Yeah, that's a great question. So, the Smile Through Art was actually our first program that we created back in 2014. It started from my own personal desire of wanting to implement using art with helping movement disorders, so a little bit of background: my mother-in-law actually had Parkinson's disease, and that's what got me very interested in seeing what the impact with art and those living with Parkinson's would be.

And so a lot of the work that we've put into developing the Smile Through Art workshops has been from taking a look into what impacts we can have on the various different symptoms of Parkinson's, and how we can make those interventions through art. So, initially, a lot of it was trial and error, so it was during our research phase where we were seeing what impacts we can have, both positive and negative.

Initially, we selected only a few different symptoms, such as depression. Tremors was another one. We wanted to see how we can use art to help someone who has a tremoring hand be able to use that hand again. Oftentimes, when a person with Parkinson's has a very severe tremor in their hand, they tend not to use it as much. So it was our goal to try to see, okay, this person is tremoring, they've stopped using their hand, now they're losing a lot of their fine motor skills and their ability to use their hand. So, how can we get them to use that hand again?

And one of the methods that we researched into and then implemented was as simple as finger painting. So now when we have this person finger paint, who has a tremor in their hand, they're actually using that shakiness to their benefit to be able to create a piece. They don't necessarily view their tremor in that light as being negative, because it's helping them create a piece while we're giving them different commands on how to move their fingers, how to move their hand, and that in turn is also enhancing their fine motor control and their overall control and being able to use that hand that tremors. So a lot of it was our own trial and error, and then implementing techniques that we've researched into that have helped other areas of movement.

Dan Keller 11:38 Are there other measures of success that you look to?

Saba Shahid 11:42 So one study that we conducted was tracking to see how the involvement of someone living with Parkinson's in this one-hour Smile Through Art workshop, what it does on their mood. The different variables that were included were if a person is sad, if they're happy, if they're angry, if they're content at the start of the workshop, and then how they're feeling at the end of the workshop.

And 98% of the time we saw an increase in mood, and that increase in mood included them going from sad to content, sad to happy, angry to content, angry to happy, and content to happy, and the remainder 2% remained content. This study was actually presented at the World Parkinson's Congress in 2016 and was also published in the Journal of Alzheimer's Disease and Parkinsonism.

Dan Keller 12:27 How has your program been received by movement disorder specialists and clinics?

Saba Shahid 12:33 When you start something like this, your end goal is to be a part of the person with Parkinson's care team, be able to help them outside of when they are in the clinic with their movement disorder specialist. And it's really amazing that now we have movement disorder specialists and neurology clinics that not only support our programs, but they write scripts for their patients to come to us to help with fine motor control, to help with helping them find hope through art, helping them find ability again through our two different programs.

One thought that I had in mind when you asked that, recently there was one of our participants told us that she went to go see her movement disorder specialist, and during the visit he was doing a check on her motor skills, he was checking her dominant and non-dominant hand. Now, in our program, we do a lot with both the non-dominant and dominant hands. And she told me that he was very pleased with the results, and her response to him was that, "My motor skills are so good right now is because I've been attending the Smile Through Art workshops."

Dan Keller 13:38 Are the workshops covered by insurance or Medicare, or is it out of pocket?

Saba Shahid 13:43 So it's all out of pocket right now. Unfortunately, we have not been successful in getting that insurance coverage as of yet. It is a goal of ours that we're working towards, but I do think, because of the pandemic, this is one of those things that gets pushed to the back end. But that's why we're grateful for the Parkinson's Foundation grant, as it's allowed us to provide this programming and provide to people who may not necessarily be able to afford it.

Dan Keller 14:07 Well, good. I really appreciate it. Sounds like a great program. You're getting good feedback from people.

To find out more about the Smile Through Art workshops, and to see how to participate, go to smilethroughart.com. Saba will soon be conducting two online sessions as part of the PD Health at Home social engagement series. The first one will be next Wednesday, April 13, 2022, and the second will occur on Wednesday, May 11. They are free, but require advance registration to protect participants' privacy while fostering interactivity. They will not be recorded, so if you'd like to attend, search our website, parkinson.org for Smile Through Art, and sign up.

If your organization would like to learn more about the Parkinson's Foundation's community grants and see current grant recipients, go to parkinson.org and search on community grants. Applications are now closed for the 2022 grant cycle, but you can reach out to programs@parkinson.org for more information on the grant program and when the next applications will open.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Saba Shahid is the Chief Smiling Officer of Creative Neurology (formerly The Art Cart), an internationally acclaimed organization that ignites creativity to take back control of symptoms in people with Parkinson’s Disease. In a short amount of time, Saba has developed her “Smile Through Art®” creativity and movement program and Let’s Combat Micrographia® program into an international offering that provides programming to thousands of patients teaching them how to live better with their symptoms instead of feeling burdened by them. Visit Creativeneurology.com to learn more.